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Thread: Mofetil - no more choices?

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    Default Mofetil - no more choices?

    My mom has been on mofetil for 18 days, but she has been constipated for 4 days.
    I have tried stool softeners with laxitives and probiotics.
    This all happened after she had vomiting and diarrhea one day.
    I have read that Mofetil has caused acute colonic pseudo obstruction, so am stopping it for a few days to see if she goes back to her daily regularity.

    The mofetil was working, too.
    Her nephrologist said she wouldn't be able to handle cytoxan.
    The rtx hasn't seemed to work well.

    However, she can't tolerate the imuran and can't take mtx due to her kidneys and if this is from the mofetil, what other choices are there since she is not in remission, yet?

    I don't know what to do anymore.

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    There are some other lesser known and lesser used anti-rejection drugs that get tried in cases like yours when AZA, MTX and cellcept don't work or can't be used. They are less proven and generally less effective and it will take some research to find out if they are safe enough for her situation. Some times a drug that didn't work can be tried again at much lower dosages and built up slowly to to therapeutic level. So that might be worth another trial. Best wishes for better health.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by drz View Post
    There are some other lesser known and lesser used anti-rejection drugs that get tried in cases like yours when AZA, MTX and cellcept don't work or can't be used. They are less proven and generally less effective and it will take some research to find out if they are safe enough for her situation. Some times a drug that didn't work can be tried again at much lower dosages and built up slowly to to therapeutic level. So that might be worth another trial. Best wishes for better health.
    Hi Drz,
    I was looking up immunosuppressants and couldn't find any others.
    Do u know of any that you have seen?


    I did try lower dose, but it wasn't doing anything, but not sure how long you have to wait.
    btw, my mom actually went this morning and hoping she still goes more today and I have kept her on the Mofetil praying the constipation is going away.
    So far, the mofetil looks like the one that can really help her, so I need this to work.

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    Quote Originally Posted by mrtmeo View Post
    Hi Drz,
    I was looking up immunosuppressants and couldn't find any others.
    Do u know of any that you have seen?


    I did try lower dose, but it wasn't doing anything, but not sure how long you have to wait.
    btw, my mom actually went this morning and hoping she still goes more today and I have kept her on the Mofetil praying the constipation is going away.
    So far, the mofetil looks like the one that can really help her, so I need this to work.
    I have seen them (other drugs) mentioned here at times but off hand don't recall the specific names.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by drz View Post
    I have seen them (other drugs) mentioned here at times but off hand don't recall the specific names.
    The only ones I had read about are cyclosporine and tracolimus, but have not seen much as far as efficacy.

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    What about Enbrel? Or is that just a fancy name for something you've already tried? I see it advertised on TV and assume its an immunosupressant, but not positive of that.

    I've been on large doses of the hard narcotics for about 5 years now and constipation is a continuing problem. No fun at all. Fortunately, nothing bad enough yet where I've had to go to [the] hospital. ("the" in the previous sentence is optional for those of you in the commonwealth :-)

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    Quote Originally Posted by vdub View Post
    What about Enbrel? Or is that just a fancy name for something you've already tried? I see it advertised on TV and assume its an immunosupressant, but not positive of that.

    I've been on large doses of the hard narcotics for about 5 years now and constipation is a continuing problem. No fun at all. Fortunately, nothing bad enough yet where I've had to go to [the] hospital. ("the" in the previous sentence is optional for those of you in the commonwealth :-)
    Enbrel is a genetically engineered biologic like rtx and is used for TNFa inhibitor, so not sure it would work.

    My mom's biggest problems are her kidneys and lungs, so it would have to be something that works for those 2 organs.

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    I think Enbrel must be mostly for joints as the advertising targets psoriatic arthritis. I have PA, but it seems to be held in check with pred and mtx, so I've never considered Enbrel.

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    Early in my WG career, a relative asked one of his doctors about my illness, helping me look for a doc, and the subject of treatments came up. The doc was not any sort of WG doc or rheumy, that I know of, but knew what WG was, and mentioned Enbrel as a possible med. I looked it up on the web and found it had been tried for WG but hadn't been found to be very useful. I do see ads for it on TV lately, I think for arthritis treatment.
    Anne, dx'ed April 2011

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    Quote Originally Posted by mrtmeo View Post
    I was looking up immunosuppressants and couldn't find any others.
    Do u know of any that you have seen?
    I have a recently published book on autoimmunity disorders which lists a ton of drugs, its in Finnish though - but I could look up the different drugs if you want. There were a bunch that I've never heard of before, and I guess they only have limited usage or perhaps are only being tried out. Like one pill was mentioned that it cost 100 euro per pill..
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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